Parental Hopes for Objective.

Understanding parents’ hopes for therapy out-

comes is essential to family-centered care. This qualitative
study explored parents’ points of view regarding their hopes
Therapy Outcomes: for the outcomes of occupational therapy using a sensory
integration treatment approach.
Children With Sensory Method. Data were collected as part of a larger
research project on the effectiveness of rehabilitating chil-
Modulation Disorders dren who have sensory modulation disorders. Five inter-
views were randomly selected from 17 parent interviews
conducted in the larger study. Data were analyzed using
grounded theory methods.
Findings. Three themes pertinent to the occupations of
Ellen Cohn, Lucy Jane Miller, Linda Tickle- children and two themes related to the occupations of par-
Degnen enting and sustaining family life emerged. Child-focused
outcomes include social participation, self-regulation, and
perceived competence. Parent-focused outcomes include
Key Words: family • quality of life • sensory learning strategies to support children and obtaining per-
integration sonal validation.
Discussion. Interventions are proposed that relate to
children’s participation in contexts in which they live, learn,
and play, as well as the support of parents in the occupa-
tions of parenting.

Cohn, E., Miller, L. J., & Tickle-Degnen, L. (2000). Parental

hopes for therapy outcomes: Children with sensory modulation disor-
ders. American Journal of Occupational Therapy, 54, 36–43.

Ellen Cohn, ScD, OTR/L, FAOTA, is Lecturer, Boston University,
Sargent College, 635 Commonwealth Avenue, Boston,
Massachusetts 02215.
Lucy Jane Miller, PhD, OTR, Assistant Professor, University of
Colorado Health Sciences Center, Department of Pediatrics,
Denver, Colorado.
Linda Tickle-Degnen, PhD, OTR/L is Assistant Professor,
Department of Occupational Therapy, Boston University,
Sargent College of Health and Rehabilitation Services, Boston,
Massachusetts.
This article was accepted for publication April 7, 1999, under the editor-
ship of Elaine Viseltear.
T
he Individuals With Disabilities Education Act of
1990 mandates family-centered care for children
and families with special health care needs (U.S.
Department of Education, 1995). This legislation places
families at the core of the intervention process and
acknowledges the influence of families in their children’s
development. Numerous authors in the occupational ther-
apy literature have advocated a family-centered care
approach (Brown, Humphry, & Taylor, 1997; Burke &
Schaaf, 1997; Cohn & Cermak, 1998; Humphry & Case-
Smith, 1996; Lawlor & Mattingly, 1998; Miller & Hanft,
1998), arguing that successful intervention requires sensi-
tivity to the perspectives of families. Specifically, providing
family-centered services requires that professionals under-
stand the hopes and outcomes desired by families who seek
services. Listening to parents’ hopes for therapy outcomes
is one way to understand the personal meaning that parents
attach to the therapy process (Spencer, Davidson, &
White, 1997).
The importance of honoring parents’ perspectives on
outcomes of occupational therapy for their children is high-
lighted by Dunn (1994) and Parham and Mailloux (1996),
and by Bundy (1991) specifically in relation to sensory inte-
gration treatment approaches. Parents have provided ardent
testimonials that occupational therapy with sensory integra-

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 tion treatment approaches improves quality of life for their
family (Anderson & Emmons, 1995; Occupational
Therapy Associates, P. C., 1995). Other occupational ther-
apy literature discusses parental views of experiences related
to early intervention using other treatment approaches
(Case-Smith & Nastro, 1993; Hinojosa, 1990; Hinojosa &
Anderson, 1991; Miller & Hanft, 1998).
This study explored parents’ hopes for occupational
therapy outcomes for children with sensory modulation
disorders (SMD), which manifest as an inability to react to
sensory stimulation in a manner appropriate to task
demands, environmental contexts, social supports, and cul-
tural expectations (Ayres, 1972; McIntosh, Miller, Shyu, &
Hagerman, submitted; Parham & Mailloux, 1996).
Clinically, persons with SMD present as hypo-responsive
or hyper-responsive, or as having labile reactions to sensa-
tion (Dunn, 1997; Kinnealey, 1973). By understanding
parents’ priorities for treatment outcomes for children with
SMD, occupational therapists can design intervention and
research programs that are congruent with parents’ hopes
and values.
Method
To research parents’ priorities for therapy outcomes, we used
a qualitative research methodology: a collective case study
approach (Stake, 1994). In qualitative research traditions,
researchers are urged to locate themselves in the research
process to explore their assumptions and use them produc-
tively to interpret findings (Maxwell, 1996; Reay, 1996;
Riessman, 1994). As researchers, we each brought individ-
ual perspectives; however, it was our common perspective as
occupational therapists that shaped the study. As clinicians
providing occupational therapy using a sensory integration
treatment approach, we have frequently heard anecdotal
accounts of the importance of focusing on parents’ stated
outcomes for their children and their families. However,
empirical examination of which outcomes are important to
parents has not been documented. As parents, we have first-
hand experience living with and parenting children; we
believe that successful occupational therapy must be linked
to the daily functioning of both the child and the family
unit and the meaning and hopes parents attach to the ther-
apy process. We are committed to a top–down approach to
evaluation (Trombly, 1993, 1995), beginning with identifi-
cation of parents’ beliefs systems, expectations of their chil-
dren, and image of family functioning.
Data for this study were generated as part of an ongo-
ing program of research measuring the effectiveness of
occupational therapy in treating children identified with
SMD at The Children’s Hospital in Denver, Colorado.
Consistent with a top–down approach to evaluation, the
pretreatment interview focused on understanding the daily
occupations of children and their families and their hopes
for therapy outcomes. The pretreatment intake procedure
included a thorough semistructured interview of parents,
The American Journal of Occupational Therapy
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which was videotaped, audiotaped, and transcribed.
Additionally, several standardized assessments were admin-
istered, including the Sensory Integration and Praxis Test
(ages 5–9) (SIPT; Ayres, 1989) or the Miller Assessment for
Preschoolers (ages 4–5) (MAP; Miller, 1982, 1988);
FirstSTEP (ages 4–5) (Miller, 1993); the Short Sensory
Profile (SSP; McIntosh, Miller, & Shyu, in press); and the
Child Behavior Checklist (CBCL; Achenbach, 1991).
Inclusion criteria for the larger research program were:
scores < –3 standard deviations on the SSP, characteristics
indicative of SMD during administration of standardized
scales, and concerns related to sensory processing and relat-
ed daily living tasks on the clinical interview. Based on the
results of these evaluations, children were admitted to the
research study.
For this study of parental hopes, five videotaped inter-
views were randomly selected from the 17 videotaped
interviews that had been administered at the time of this
study. The five videotapes include interviews with eight
parents (three couples and two single parents). Table 1 pre-
sents demographic information about the parents and their
children. Two children lived with their adoptive parents
and three children lived with their biological parents. The
children varied in ethnicity, however, all of the parents were
white. Table 2 presents standardized scores of the five chil-
dren on the SIPT or MAP, the SSP, and the CBCL.
Interviews
Parent interviews ranged from 45 min to 60 min and began
with the question, “Tell me about (child’s name). Talk
about what is wonderful or special about (child’s name).”
The interview included 11 structured questions (see
Appendix) but, because the interview process was flexible,
probes were added, wording was modified, and additional
queries or explanations were provided as needed to clarify,
explore, or extend information pertaining to parents’ views,
concerns, and hopes for their children.
Data Analysis
We explored the cases collectively, using grounded theory
procedures (i.e., constant comparative method) recom-
mended by Strauss and Corbin (1990). Transcripts were
subjected to open coding—the naming and categorizing of
phenomena—for themes that related to parents’ hopes for
therapy outcomes. The open codes or categories were com-
pared and contrasted to detect similarities and differences
Table 1
Demographics of Children and Their Parents
Child’s Namea Gender Age Ethnicity of Child Parent’s Education
Harry M 6 Asian College
Monique F 8 White Postgraduate
Joanna F 5 African-American < High school
Kisha F 6 Hispanic High school
Adam M 4 White College
a
Pseudonym.
37
 Table 2
Results of Children’s Scores in Four Standardized Scales
Sensory Integration and Praxis Tests Short Sensory Profile Child Behavior Checklist
Participant <–1 SD ±1 SD >+1 SD <–1 SD ±1 SD >+1 SD <–1 SD ±1 SD
Harry KIN SV, FG PRVC TS VAS Internalizing Withdrawn
LTS FI, GRA TSS MT Attn Prob Somatic
DC, MAC UR/SS Externalizing Anx/Depres
CPr, OPr AF Aggressive Social Prob
SPr LEW Thought Prob
SWB Delinquent
PRN

Monique KIN SV, FG MAC TS TSS Anx/Depres Internalizing

SWB PPr, CPr UR/SS LEW Thought Prob Withdrawn
PRN MFP, LTS AF MS Attn Prob Somatic
FI, GRA VAS Externalizing Social Prob
SPr Delinquent
DC, BMC Aggressive
PrVC, PPr

Joanna GRA SV, FG MFP TS MS TSS Thought Prob Internalizing

SPr LTS UR/SS Attn Prob Withdrawn
BMC KIN AF Social Prob Somatic
SWB CPr, OPr VAS Externalizing Anx/Depres
Mac PPr, PrVC LEW Aggressive Delinquent
PRN DC
FI

Kisha KIN SV FG TS TSS Anx/Depres Internalizing

GRA PPr, PrVC UR/SS LEW Delinquent Withdrawn
BMC CPr, OPr AF MS Thought Prob Somatic
PRN MFP, LTS VAS Attn Prob
DC, MAC Social Prob
FI Externalizing
SWB Aggressive

Adama TS MS Internalizing Anx/Depress

TSS Withdrawn Externalizing
UR/SS Somatic Delinquent
AF Thought Prob Aggressive
VAS Attn Prob
LEW Social Prob
Note. Sensory Integration and Praxis Tests: BMC = bilateral motor coordination; CPr = constructional praxis; DC = design copying; FG = figure–ground percep-
tion; FI = finger identification; GRA = graphethesia; KIN = kinesthesia; LTS = localization of tactile stimuli; MAC = motor accuracy; MFP = manual form percep-
tion; Opr = oral praxis; PPr = postural praxis; PRN = postrotary nystagmus; PrVC = praxis on verbal command; SPr = sequencing praxis; SV = space visualization;
SWB = standing and walking balance. Short Sensory Profile: AF = auditory filtering; LEW = low energy/weak; MS = movement sensitivity; TS = tactile sensitivity;
TSS = taste/smell sensitivity; UR/SS = underresponsive/seeks sensation; VAS = visual/auditory sensitivity. Child Behavior Checklist: Aggressive = aggressive behav-
ior; Anx/Depres = anxious/depressed; Attn Prob = attention problems; Delinquent = delinquent behavior; Externalizing = externalizing; Internalizing = internaliz-
ing; Social Prob = social problems; Somatic = somatic complaints; Thought Prob = thought problems; Withdrawn = withdrawn.
a
Miller Assessment for Preschoolers: Total score = 2%; Foundations Index = 1%; Coordination Index = 1%; Verbal Index = 1%; Nonverbal Index = 53%; Complex
Tasks = 1%

across the five cases. Categories that represent dimensions
of overlap with each other were grouped and analyzed
using axial coding. This process binds information in new
ways, suggesting relationships and variations among cate-
gories (Strauss & Corbin, 1990). From this step emerged
the two core categories of our analysis, child-focused out-
comes and parent-focused outcomes.
After creating conceptual categories, we analyzed the
relationships between the key categories to generate ideas
about phenomena (Strauss & Corbin, 1990). Thus, in the
selective coding phase of our data analysis, the core categories
were refined and validated by selecting and systematically
relating the two primary categories to other possible group-
ings. We then constructed a taxonomy for classifying
parental hopes related to outcomes of occupational therapy
for their children and themselves.
To confirm that our interpretations reflected the par-
ticipants’ perspectives, we conducted member checks, test-
ing the validity of our conceptual categories. The categories
were further refined based on participants’ feedback. The
final analytic categories were reviewed by a group of expe-
rienced occupational therapy researchers and by a group of
sociology doctoral students, both of whom were familiar
with grounded theory analysis. Both groups reviewed tran-
scripts and confirmed the researchers’ open coding and cat-
egory construction.
Findings and Interpretations
When asked to identify their hopes and expectations for
therapy, parents spoke about three outcomes for therapy
that focused on changes in their children. In addition, par-
ents identified two outcomes focused on themselves or
their families, viewing themselves as both change agents for
their children and recipients of service and support.

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 Findings for each of the two core categories, child-focused
outcomes and parent-focused outcomes, are detailed below.
Child-Focused Outcomes
Social participation. Parents in the study wanted their chil-
dren to develop behaviors and skills needed to “fit in,” to
belong, and to be included at school and in their commu-
nities. They hoped that their children would learn appro-
priate ways to behave so they could conform to the cul-
tural norms of their daily living contexts. Comments such
as “We’d like her to be able to sit in a classroom situation
and learn,” or “We want him to be successful in school,”
highlighted parents’ perceptions of the importance of the
school context. One mother specifically identified com-
munity as a valued context. She stated, “I would like to be
able to take him to the grocery store without him high-
jumping off my shoulder.” Social participation also
included relationships with same-age peers, with siblings,
and with other children. One parent stated that having
friends and “being socially okay” was a major concern.
Another noted the difference between her child’s inability
and her niece’s ability to interact with a baby. She
expressed her hopes:
Tamara [her niece] has the ability to sit down…and sit by the baby and
be real quiet and just ask questions and look at the baby and touch the
baby. Joanna’s bouncing and jumping, and I’m afraid she is going to fall
on the baby. I mean, it’s a totally different thing.
Coster defined the construct of social participation as
“active engagement in the typical activities available to
and/or expected of peers in the same context” (1998, p.
341). In this study, Coster’s construct describes the parents’
highest priority for outcomes: that parents hope that their
children will be “able to orchestrate engagement in occu-
pations in a given context that are positive, personally sat-
isfying and acceptable to adults in society who are respon-
sible for children” (p. 340). Valued contexts that the par-
ents in the present study identified included school, home,
and the community.
Self-regulation. Parents hoped that their children would
develop coping mechanisms to self-regulate their behavior.
Adam’s mother said, “It is a good thing for children to have
self-control and regulate themselves.” Although Harry’s
mother hoped that Harry ultimately would be able to reg-
ulate his own hyperactive behaviors, she suggested that if
Harry could learn to seek help from others, that could be a
useful strategy as well. She expressed a desire for Harry to
learn to channel his hyperactivity:
I don’t expect for [the hyperactivity] to go away, because I think it is so
high right now, and it’s just part of [him]. But some way to be able to
have him know how to channel that, so it can get down to a level that’s
acceptable, for instance, in school. That would be really nice. Some
overflow into being able to feel how he is feeling and whether he’s feel-
ing jittery and what to do about that, where he might be flying off the
handle. If he could kind of get a grasp on that, verbally or somehow
emotionally, so that he can either tell me, tell the teacher, get some help
somehow, or be able to do it himself.
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Harry’s mother yearned for him to recognize how he
feels and to develop a range of options to seek the assistance
he needs, learning how to regulate his own behavior in the
valued context of school.
Kisha’s mother expressed a desire for Kisha to learn “to
be cognizant” of her own behavior in order to develop self-
control. Kisha’s mother hoped that the self-control would
generalize to other situations.
I would like to see her be able to stop and realize the consequences of
her behavior and change her behavior. There are times she is totally out
of control, and she is not cognizant of what she is doing. She doesn’t
understand why I am so upset when she has been screaming for 2
hours. I would like to see her control that. I know she wants to…So
once she learns to control one thing, she is going to say, oh, maybe this
can apply here.
Perceived competence. Monique’s mother linked estab-
lishing internal feelings of self-confidence to Monique’s
ability to regulate her behavior. She hoped that Monique’s
recognition of her ability to help herself would lead to
greater perceived competence in the context of her emer-
gence as a young woman.
At this point in Monique’s life, when she is about to turn 9, she’s enter-
ing a time in a young woman’s life that is one of the most difficult…the
more we can understand about her, the more she can help us to help
herself. If it gives her some self-confidence or additional tools to work
with on her own when she’s not around us, she can say, “I can help
myself here and I feel good about myself.”
Trombly (1995) defined competency as a sense of sat-
isfaction with one’s own implementation of the tasks asso-
ciated with valued roles. These parents hoped that their
children would feel satisfaction with themselves. That is,
they hoped that their children would get pleasure from
what they themselves were able to do and who they were as
people. One mother stated,
What I want for Harry is, like, happiness or contentment or satisfac-
tion with himself…it is bigger than just self-confidence but includes
self-confidence…I wish he could get pleasure from what he himself can
do and who he is as a person.
Two themes identified in our study were consistent
with valued outcomes identified by Anderson (1993) in her
study of parental perceptions of the influence of sensory
integration therapy for children with autism. The parents
in Anderson’s study reported that their children made gains
in socialization with other children (social participation)
and in their ability to express emotions and desires (self-
regulation).
Parent-Focused Outcomes
The parents discussed desired changes for themselves, iden-
tifying two interrelated roles: provider of support for their
children and recipients of validation as parents for them-
selves. These parent-focused hopes can best be understood
when intervention is viewed as a collaborative process, co-
constructed by parents and therapists.
Learn strategies to support the child. The parents in the
present study saw themselves as providers of support for
39
 their children. In this role, they hoped to become collabo-
rators, combining efforts with occupational therapists to
assist children. Ruddick (1989) proposed that one of the
major tasks of parenting is to “shape children’s growth in
‘acceptable’ ways” (p. 21), acceptable being defined by the
cultural context of the family. The parents who were inter-
viewed specifically asked for techniques that they could use
to help their children calm down or self-regulate. Because
Adam was only 4 years of age, his parents indicated that
they were seeking tools to soothe him: “I think if we are
just able to learn some techniques to help him calm down.”
Many of the parents suggested that understanding
their children’s behavior would help them to support their
child’s growth. Monique’s mother said, “The more we can
understand about her, the more she can help us to be able
to help herself.” Drawing on the metaphor of “living with
an alcoholic,” Kisha’s mother described her frustration in
living with Kisha’s unpredictable behavior and wanted to
understand what triggered Kisha’s behavior.
She’s very moody, it’s like living with an alcoholic. You never know.
That’s the scary part. I still have not been able to figure it out, although
I am starting to get clues…as to…what triggers it.
Understanding their children’s behavior was a dominant
theme among the parents and was consistent with Anderson’s
finding that parents value understanding their children’s
behavior from a sensory integration frame of reference.
Personal validation. Closely related to receiving support
for parenting their children, the parents hoped that thera-
pists would understand the challenges of living with chil-
dren with SMD. Joanna’s mother stated, “I just can’t take it
anymore,” and Adam’s mother said, “He is affecting our
lives and everybody around us…he’s bouncing off the walls
and we can’t get him to stop…it’s exhausting.” In a mem-
ber check interview, Harry’s mother declared:
I want confirmation that I’m not “weird,” that Harry isn’t “bad,” that
there are other children like Harry, that his problems are “real” and not
just in my head. I want to be accepted and bolstered for what I do for
Harry rather than people thinking that I’m a bad mother.
These parents wanted to understand their children.
They also wanted therapists to understand their experience
of parenting a child with SMD. The parents hoped that
this combination of learning tools to help their child, and
being understood and accepted themselves, coupled with
the child’s improvement in social participation, self-regula-
tion, and perceived competence, would ultimately facilitate
sustainable family routines.
We ultimately want to make it easier to live together as a family…if
Harry is getting better, and I am getting tools to help Harry, and I’m
getting confirmation that what I’m doing is OK, then the life of our
whole family will get better.
Based on interviews with families with a young child
who exhibited developmental delays, Gallimore, Weisner,
Kaufman, & Bernheimer (1989) hypothesized that the key
adaptation task for the family is organizing daily routines
40
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so that they are sustainable, meaningful, and congruent
with the individual needs of family members and with fam-
ily themes. The families in the Gallimore et al. study con-
structed and sustained meaningful routines to provide
proper care, supervision, and stimulation for their children.
Embracing a systems perspective, Gallimore and colleagues
noted that the well-being of the family depends on the
functioning of the whole system as well as the functioning
of each family member. Their data showed that interven-
tion with children with special needs can be effective only
when the interventions are sustainably integrated into the
routines of the family.
In our study, Joanna’s mother wanted therapy to
improve the consistency of her daughter’s behavior. She
wanted to be able “to know that I can count on my daugh-
ter.” As reported above, another parent wanted to take her
child to the grocery store, and yet another parent wanted to
feel “okay” about her child being near a baby cousin. These
are all examples of the parent’s desire to see changes in their
child’s behavior so that family routines can be sustained.
Parental hopes for therapy outcomes are embedded in
contexts in which their children live, learn, and play, as
depicted by Figure 1. The figure also depicts the child-
focused and parent-focused outcomes derived from this
study, including the following:
• Child-focused outcomes: social participation, self-
regulation, and perceived competence; and
• Parent-focused outcomes: learn strategies to sup-
port child and personal validation.
Theoretical Validity of Interpretations
To address the theoretical validity of our interpretations, we
searched the interviews for themes other than the five iden-
tified and for themes specifically related to processing sen-
sation. In the interview, parents were asked to describe their
children’s reaction to sensory stimulation including: olfac-
Figure 1. Parental hopes for therapy outcomes.
January/February 2000, Volume 54, Number 1
 tory, auditory, visual, tactile, taste, and movement stimuli.
We selected these questions based on the assumption that
because these children were identified as having SMD, we
expected that the sensory problems inherent in SMD
would be evident in the parental concerns and hopes for
their children. However, reexamination of data generated
by the question “How does your child respond to sensory
stimuli?” revealed that parents’ responses were framed in
terms of social participation, self-regulation, and perceived
competence. For example, Harry’s mother noted that his
tactile defensiveness interfered with his social relationships
with other children.
He is a child that doesn’t like light touch…He is tactile defen-
sive.…When children are around him, they kind of bustle or touch
him in the hallway, that’s very annoying to him, and it increases his
activity level and sometimes increases his aggressiveness. However, he
also needs to touch other children. So he constantly has his hands did-
dling in the desk of the person next to him.
As a physical therapist, Harry’s mother used clinical
language (e.g., “tactile defensiveness”), yet she immediately
embedded Harry’s behavior in the occupational tasks of
peer relationships.
She elaborated when she discussed Harry’s reactions to
auditory stimuli, describing how his sensitivity to such
stimuli interfered with his ability to attend a sporting event
and have social relationships.
An overall crowd noise, a background noise, increases his activity level.
It makes him angry or more emotionally labile.…A sporting event is
pretty difficult for him. He can’t go with friends.
Monique’s mother also responded to questions about
sensory sensitivity by describing functional activities of
daily living, such as, “Monique must have the tags cut out
of her clothes.” She mentioned Monique’s preference for
cotton and terrycloth clothes but quickly shifted the con-
versation to behavioral concerns. She explained that
Monique fixated on something that she wanted to buy, eat,
or do and constantly talked about it. To regulate her own
behavior, Monique liked to know what was going to hap-
pen next. Although Monique’s mother began with infor-
mation about Monique’s sensory processing, she quickly
transitioned to concerns about self-regulation and strate-
gies that would help Monique enjoy activities.
Adam’s mother also shifted her responses to questions
about sensory processing to functional concerns. In response
to the question, “Is he sensitive to tags and other things?,”
Adam’s mother talked about his behavioral rigidity.
I haven’t had to take tags out of everything, just the ones that he can
feel, he will complain about. Yesterday morning, he went to change his
underwear. He looked and he said, “flowers, Fruit of the Loom,” and
he gets the other pair of underwear and he puts them right next to each
other, “flowers.” And then they were okay to put on. Rigidity like that.
Instead of the question about clothing tags eliciting a
concern about sensory processing, it evoked a story about
Adam’s rigid behavior.
These stories illustrate our overall finding that parents
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of children with SMD are primarily concerned about their
children’s social behaviors and that sensory concerns are
addressed within the context of functional behaviors.
Parents rarely talked about their children in terms of the
sensory components of function. For example, they did not
say, “My child is unable to discriminate tactile input.”
Instead, the language the parents used embedded perfor-
mance components (such as tactile discrimination) in the
context of everyday occupations.
A thorough review of the five transcripts to search for
discrepant data (i.e., data that could not be categorized as
social participation, self-regulation, or perceived compe-
tence) revealed only one discussion related to the skill of
balancing. Monique’s father shared that a therapist had told
him that his daughter had trouble closing her eyes and bal-
ancing at the same time. Although all children had been
assessed by an occupational therapist prior to the parent
interview, and the therapists’ review of findings with par-
ents may have educated parents about their child’s clinical
issues, the preponderance of parent responses during their
interview related to their child’s daily occupations.
These findings provide a useful framework for think-
ing about evaluation, intervention, and outcomes of chil-
dren with SMD that are meaningful to our consumers. It
should be noted that this information relates to only five
families with children identified with SMD and may not
represent all parents of children with SMD. Further, the
multidimensional contributions of temporal, socioeco-
nomic, and cultural factors on parents’ hopes for therapy
outcomes were not analyzed for this study and might pro-
vide meaningful information related to parents’ hopes for
therapy outcomes in future studies.
Implications for Practice
The findings highlight the import of understanding par-
ents’ realities and the contexts in which children live.
Children with SMD have complex and multiple needs
extending beyond their sensory processing abilities. This
study documents that parents of children with SMD high-
ly value their children’s abilities to participate in the con-
texts in which they live, to self-regulate reactions, and to
feel competent.
The study design and findings provide information
that will be helpful to occupational therapy practitioners
striving to follow recommendations by Coster (1998) and
Trombly (1993), who urged therapists to use a top-down
approach to the evaluation process, beginning with the
occupations the person needs and wishes to perform.
Further, our findings imply that these parents seemed to
intuitively believe Rogoff’s postulate (1990) that, for chil-
dren, successful management of occupational tasks and
participation in society depends on adults and children
structuring the environment. Thus, attending to parents’
concerns and how they structure their environment to sus-
tain family life is advised.
41
 In practice, the assessments therapists choose and the
outcomes they measure are operational definitions for their
priorities for change in intervention (Haley, 1994). If ther-
apists begin evaluations with performance components,
they may miss meaningful outcomes such as social partici-
pation for children and their families. The challenge is to
evaluate social participation, self-regulation, and perceived
competence in important contexts. Examples of assess-
ments that may be useful for documenting change in the
occupational domains mentioned by parents in this study
are The School Function Assessment (Coster, Deeney,
Haltiwanger, & Haley, 1998), which measures social par-
ticipation in the school setting; the Child Behavior
Checklist (Achenbach, 1991), which measures self-regula-
tion; and the Piers–Harris Children’s Self-Concept Scale
(Piers, 1984), which measures self-concept. Documenting
changes related to parenting occupations is also recom-
mended (see Cohn & Cermak, 1998, for a review of assess-
ments related to the family system).
Given the insights from this research, we recommend
that therapists strive to understand issues that are crucial to
parents of children seeking occupational therapy services.
Knowledge about parents’ priorities depends on under-
standing what behavior, events, persons, or routines mean
to those who partake of them. Meanings cannot be
assumed. To understand a family’s values, goals, and aspi-
rations for their child and themselves, therapists must listen
carefully to family members’ perspectives. Therapists
should ask parents to describe hopes for treatment out-
comes and how they will know if therapy is successful.
Queries might include “What are you hoping will be dif-
ferent about your child as a result of therapy?” or “What do
you anticipate treatment will do for you or your family?”
Using parents’ language, rather than clinical language, will
help communicate to families that their perspective is
respected. Asking parents to describe their family and what
they enjoy doing together or asking about family routines
may provide valuable insights into the family’s experiences.
Because parents are the primary decision makers for their
children, they should be actively involved in constructing
intervention plans. True collaboration involves discovering
solutions that best fit families’ needs and circumstances. To
be effective, intervention must be sustainable within the
contexts of family life.
Implications for Research
In addition to using assessments to examine the constructs
of social participation, self-regulation, and perceived com-
petence, research is needed to examine the ways in which
sensory processing, occupational performance, and perfor-
mance contexts influence each other and how changes in
one domain may or may not lead to changes in another
domain. Occupational therapy that uses a sensory integra-
tion treatment approach is based on the assumption that
enhanced sensory experiences, within the context of mean-
42
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ingful activities, results in more adaptive behaviors (Fisher
& Murray, 1991). The parents in this study described
hopes for changes in social participation, self-regulation,
and perceived competence in their children. Although
there is an implicit belief in the profession that occupa-
tional performance (social participation), performance
components (self-regulation and modulation of sensory
stimuli), and performance contexts (home, school, com-
munity) are related, it is crucial to recognize that this
assumption has not been empirically examined. The rela-
tionships are complex and require further exploration and
empirical validation. To address the hopes of consumers for
intervention and research outcomes, the links must be con-
sidered between children’s underlying sensory processing
difficulties, the impact of difficulties on children’s behavior,
and the effect that living with SMD and parenting a child
with SMD has on the entire family system. s
Acknowledgments
We thank the parents and children who participated in this study. We also
thank the following: The Denver Children’s Hospital Research Institute; R.
Hagerman, MD, D. Matthews, MD, and other staff and faculty members at
The Children’s Hospital, Department of Rehabilitation; D. McIntosh
(research director); J. McGrath (lab coordinator), K. Church, and J. Bonnell
for invaluable lab assistance; J. Butler, R. Greer, P. Kenyon, N. Pine, R. Seger,
C. Summers, S. Trunnell, and L. Waterford for evaluation and treatment of
children; and J. Benzel for administrative support. The study was supported
in part by a grant to Sargent College Health and Rehabilitation Sciences,
Boston University, from the U.S. Department of Health and Human
Services, Health Resources and Services Administration, Maternal and
Child Health Bureau (MCJ-000-901), and MCH grant # MC J 08941301.
In addition, the Wallace Research Foundation provided primary support for
the larger research project. This article was written in partial fulfillment of
the dissertation requirements for the first author’s degree of Doctor of
Science, Sargent College, Boston University.
Appendix A
Parent Interview
1. Tell me about [child’s name]. I especially want to hear about the
kinds of things that you enjoy about [child’s name], what his/her
gifts and talents are; what his/her strong points are.
2. What has led you to seek occupational therapy services for
[child’s name]? (If necessary: what have you noticed about
[child’s] development that concerns you?)
3. Tell me about [child’s] abilities in: daily care activities; play; making
and keeping friends; following directions; communicating; regulat-
ing his/her behavior; activity level; and falling and staying asleep.
4. What do you notice about [child’s] reactions to sounds; reactions
to lights and other visual stimuli; reactions to being touched;
reactions to smelling things; and reactions to moving in space?
5. Tell me about your pregnancy, delivery and [child’s] early history.
6. Tell me about [child’s] hospitalizations or medical problems.
7. Tell me about [child’s] previous therapy or treatment.
8. Tell me a little about whom else is in your family. What things do
you enjoy together?
9. (If in school) What is school (preschool) like for [child’s name]?
Is there anything that you would like to see changed about his or
her school situation or the way she or he is at school?
10. What kind of toys or outdoor equipment do you have that
[child’s name] enjoys? What does [child’s name] do after school
and on weekends?
11. What are your expectations and/or hopes for therapy? (Or what
is it about [child’s name] that you are hoping will change?)
January/February 2000, Volume 54, Number 1
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